Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
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Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research. / Otten, Marina; Augustin, Matthias; Blome, Christine; Topp, Janine; Niklaus, Marina; Hilbring, Caroline; Bechara, Falk G; Pinter, Andreas; Zouboulis, Christos C; Anzengruber, Florian; Kirsten, Natalia.
In: ACTA DERM-VENEREOL, Vol. 103, adv00859, 31.01.2023, p. adv00859.Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review
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TY - JOUR
T1 - Measuring Quality of Life in Hidradenitis Suppurativa: Development and Validation of a Disease-specific Patient-reported Outcome Measure for Practice and Research
AU - Otten, Marina
AU - Augustin, Matthias
AU - Blome, Christine
AU - Topp, Janine
AU - Niklaus, Marina
AU - Hilbring, Caroline
AU - Bechara, Falk G
AU - Pinter, Andreas
AU - Zouboulis, Christos C
AU - Anzengruber, Florian
AU - Kirsten, Natalia
PY - 2023/1/31
Y1 - 2023/1/31
N2 - Hidradenitis suppurativa is a chronic disease that disrupts patients' physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0-4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach's alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa.
AB - Hidradenitis suppurativa is a chronic disease that disrupts patients' physical and psychological well-being. A disease-specific measure was developed and validated for assessing health-related quality of life in hidradenitis suppurativa. After qualitative item development, the quality of life in hidradenitis suppurativa instrument was tested in 101 patients, applying convergent measures and a usability questionnaire. Descriptive and validation-specific analyses were conducted. There was no ceiling, but moderate floor effects (scores between 0 and 3.13 on a scale of 0-4). Few missing values were observed (21 of 23 items < 5%). Internal consistency was satisfying: 2 subscales with 6 and 16 items were identified (Cronbach's alpha=0.95 and 0.88). The quality of life in hidradenitis suppurativa instrument correlated significantly with all convergent criteria (including change in convergent patient-reported outcomes; p < 0.05) except for Hurley stage (p = 0.490). In conclusion, the quality of life in hidradenitis suppurativa questionnaire is an internally consistent, valid, responsive, and usable instrument to assess quality of life in patients with hidradenitis suppurativa.
U2 - 10.2340/actadv.v102.2485
DO - 10.2340/actadv.v102.2485
M3 - SCORING: Journal article
C2 - 36129249
VL - 103
SP - adv00859
JO - ACTA DERM-VENEREOL
JF - ACTA DERM-VENEREOL
SN - 0001-5555
M1 - adv00859
ER -
